Author: Mary Choi Smith, Community Member
Aspiring to make a positive difference, no matter how small, has always been important to me.
I’ve known about my SCA6 for about 5 years, first suspecting I had it because of balance issues that started in my 50’s. My father had SCA6, as do several cousins, aunts, and uncles.
I was intrigued to learn about NAF’s advocacy goals and activities and, hoped to find ways I could participate. Here’s what I learned, and why I decided to participate in Hill Day 2023. I will definitely do it again!
Learning About Hill Day
- I learned that NAF’s Hill Day program began around 2019, and since then has grown from about 14 initial advocates, to 164 advocates this past year.
- What really got my attention: NAF, in partnership with FARA (Friedrich’s Ataxia Research Alliance) – was able to get “Hereditary Ataxia” included as eligible for government medical research funds available through a program called CDMRP/PRMRP. In FY22, six grants were awarded $14M for ataxia research! This potential really blew me away.
- I realized that the advocacy program was making a huge difference by increasing ataxia education and awareness to US legislators, and by asking them to vote to support specific legislation which helps our rare disease community.
I wanted to be a part of this advocacy effort, and I’m so glad I did. It was a great experience!
Preparing for Hill Day 2023
NAF/FARA did a professional, thorough, and thoughtful job of organizing and preparing us to participate. We had a Training Day, where we learned about the context and goals of Hill Day. We learned about exactly what to expect, and how we could best prepare individually, and with our small teams.
We were assigned to a team in our geography, so we could participate in Hill Day Zoom meetings with our actual legislators. We then prepared with our teams, so we could practice our own “elevator speech” – our short, personal story about our Ataxia experience. We also planned how we would ask for support of specific Congressional legislation.
I loved working with my team members and learning from them – smart, caring, lovely people I’m lucky to know.
Going Live on Hill Day
On Hill Day, we knew our schedule of Zoom meetings, felt well prepared, and away we went! It was so much fun, and exciting to speak directly with our legislators and their staffers.
The responses were positive and encouraging. The legislators were very interested to hear our personal stories of living with Ataxia, and seemed willing to support our asks of them. It is rewarding to see that these efforts have had positive results – and I’m hopeful they will continue to!
Hill Day 2023 was fun and fulfilling, and I’m so appreciative of NAF’s leadership in making it happen. I met wonderful people and made new friends in our ataxian community. We are fortunate to be in this together, and I would encourage anyone who is curious about or interested in participating to join in!
Read Other Advocacy News
National Ataxia Foundation Hosts Congressional Briefing with Bill Nye, The Science Guy, to Raise Awareness of Ataxia and the Impact on Patients and their Families
Session focused on the importance of funding research and approving new treatments for rare diseases, especially those with no FDA-approved treatment options like Spinocerebellar Ataxia (SCA) Minneapolis, MN (November 19, Read More…
Congressional Resolution Passes to Designate September 25 as “National Ataxia Awareness Day”
This designation is important to raising awareness of ataxia, ataxia research, and the search for a cure. Minneapolis, MN (September 20, 2024) – The National Ataxia Foundation (NAF) and the Read More…
2024 United Against Ataxia Hill Day
Join NAF and our partners at FARA in advocating for Ataxia and rare disease related policies during our annual United Against Ataxia Hill Day on September 25th! Advocates will have Read More…
Read Our Latest Blogs
